Julie Murchinson

By Julie Murchinson. The Robert Wood Johnson Foundation-funded program, Project HealthDesign, is pursuing the identification, interpretation and integration of observations of daily living (ODLs). As defined by Project HealthDesign, ODLs are sensations, feelings-thoughts-attitudes, and behaviors that occur in the course of everyday life – such as sleep patterns, diet, exercise levels, pain episodes, and mood – that are not typically part of one’s clinical record, but are critical to managing an individual’s health and guiding their treatment.

During the recent Project HealthDesign workshop, I was struck by the question of what ODLs have the potential to do to engage patients in their health. Will ODLs be the patient’s true representation of issues they own and manage as part of their health or will they be factoids about patients that doctors use but patients don’t truly own? Will ODLs management come naturally or will managing them be an arduous task for the unfortunate individuals who may “need” to manage them? Will doctors be able to synthesize ODLs into clinical practice or will they be too overwhelmed to incorporate another set of information they may not know how to handle or not be remimbursed to pay attention to?  Will ODLs evolve with medical research such that they will be taken into consideration as part of future discovery or will ODLs always be an afterthought left to discovery at the point of care?  Much remains unknown about the fate of ODLs, but there is strong potential for ODLs to be the patient engagement hook in the years to come.

Three big “ah-ha’s” came this week as I listened to grantees develop, describe and integrate ODLs into their research project plan.

1.       ODLs development may depend upon the disease – As we know all too well, there are some diseases we understand well and some we do not. For those we know well, ODLs may be more “top-down” or centered around clinical relevance because healthcare providers feel they know what works best for the patient or for the efficiency of the treatment of that patient.  If we do not understand a disease well, ODLs may, in fact, be more “bottom-up” or grassroots in their development because they are more about disease discovery from each and every patient.  We may learn what makes the disease tick through the experiences and narratives of the patient.  We may discover an entirely new pattern or create a new way to help patients self-manage between visits based on the experiences of other patients.  ODLs in the world of little clinical evidence may become the evidence that causes discoveries in the personalization of health care.  Although this difference in ODL discovery, development and utilization does seem to be emerging, I question whether the derivation of ODLs will have varying results in engaging the patient.

2.       ODLs will be best managed if co-managed – While sensors exist and are rapidly evolving, tracking and managing an ODL is likely to be a conscious task with today’s technology. Although the greatest researchers are working hard to make ODL capture as seamless as possible in their projects, the fact is that managing them will be a patient’s job to some or a large extent.  To make this worthwhile for the patient, the patient needs to see value from tracking and/or managing that ODL.  If a clinician does not understand how to properly synthesize an ODL as part of managing a patient’s care, neither the patient nor the clinician will see much value in ODLs.  An incredibly simple yet poignant discovery was made this week in the importance of co-managing ODLs through a co-designed care plan…one that satisfies the questions, interests and willingness of BOTH the patient and the clinician in identifying, documenting, planning and managing ODLs as part of a patient’s care plan.  Is this novel…co-management?  We’ve heard this term before in other forms…shared decision-making, activated patient care, etc., but do we really understand the power of this concept to engage patients?  ODLs may be a new opportunity for the medical industry to engage patients in aspects of health they understand and may be able to control.

3.       ODLs may create new relationships in patient care – We patients love our doctors and place a premium on more time with our doctors.  We bring our doctors information we collect from the web and trust our doctors to use it.  We believe that our doctors know best.  However, many of us are increasingly seeing others on the care team…nurse practitioners, mid-level clinicians and health coaches…a potentially growing trend in our evolving policy landscape.  Our doctors are expanding our touch points to handle the complexities of our diseases.  ODLs may add an entirely new dimension to the complexities of our diseases in ways that are foreign to the episodic visit model.  ODLs may drive streaming data to a care team member or be managed through a set of automated algorithms in an electronic system.  Regardless, the reality is that doctors may delegate ODL management to others on the care team.  This reality may both increase patient engagement with someone in patient care, but may also be a hard pill to swallow for those of us who really like our doctor.

We are in the midst of an unprecedented opportunity to modernize our healthcare system and are placing bets on our ability to engage patients appropriately by educating them about how we are doing it. Though still in their infancy of development, ODLs may be a critical component to truly engaging the patient because they are important factors the patient understands and may have interest in managing…thus improving health and health care for all who care.  I am excited for the future of ODLs and thoughtful about their approach…let’s hope other patients are, too.

This post is cross-posted on the Robert Wood Johnson website.

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